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When It’s Life or Death, Who Makes the Call?

Jolee Mohr died in July at the age of 36 after receiving experimental treatment for arthritis. “It was supposed to be just a simple thing,” said her husband, Robb, but something went horribly wrong.

“No one knows yet whether the treatment was to blame,” wrote Rick Weiss of the Washington Post. “But a close look at the events leading to Mohr’s death reveals failures in the safety net that is supposed to protect people from the risks of medical experimentation.”

Last week, the U.S. Court of Appeals for the District of Columbia ruled that terminally ill patients do not have a constitutional right to use experimental treatments without being enrolled in a clinical trial or participating in other very limited Food and Drug Administration-approved options, even if their doctors believe that such treatment is their best chance for survival. The case is being appealed to the Supreme Court.

The D.C. appeals court and so many others who share a “safety first” approach to experimental treatment are only seeing half the picture. Experimental treatment is inherently risky. But overemphasizing safety prevents patients from taking a calculated risk when they think it’s worthwhile.

As my husband and I learned, that freedom is important. Our son was diagnosed with cancer when he was 9 months old. Next week, he leaves for college, and the only visible reminder of his brush with death is a scar from surgery.

No, I’m not saying that an experimental treatment saved his life. What probably saved him was his parents’ persistent questions, and events resulting in a course of treatment that changed so often no doctor would have recommended it at the beginning.

Individuals often react unexpectedly even to conventional treatments, let alone experimental ones. What would have happened if someone had told us, “Sorry, that treatment is no longer an option. It has been found unsafe because children have died from it.”

At the time, all the treatments — including the experimental ones we were offered but ended up not choosing — resulted in about a 50% chance of death, and in many cases they killed the children before the cancer did. But there were still crucial choices to make. No one was as well suited to make them than we were, in consultation with our son’s doctors.

In the appeals court case, the Abigail Alliance for Better Access to Developmental Drugs sued the FDA for refusing to allow terminally ill patients to purchase experimental drugs. Patients who couldn’t gain access to the medicines they wanted — because the trials were closed or the patients were too sick or otherwise didn’t qualify for FDA permission — petitioned the FDA to be allowed to take medicines under the supervision of their own doctors.

According to the FDA, such treatments would lead to unacceptable risk.

Unacceptable to whom?

In denying patients the right to weigh the risks for themselves, the FDA and the court denied them their only hope for survival. The government essentially told them that it would be better for them to do nothing and die than to take risky experimental treatments.

We do not need a governmental authority involved in medical decisions that are uniquely personal to patients and their families. But along with the right to make decisions comes the obligation to think them through. Any doctor who lies to patients or intentionally misleads them about the risks of certain treatments should be punished, but patients need to read informed-consent forms carefully, ask questions and not assume that their doctors can do risk-benefit analyses without knowing what’s most important to the patient.

In our case, each option had its own set of risks, including death, but also a chance at a better life. One experimental protocol we were offered tested a new course of chemotherapy that had a lower chance of stunting our son’s growth or causing sterility, but possibly also a lower chance of curing his cancer. But at least we had this option.

I wonder if in this “safety first” climate toward experimental treatment — and with this latest court ruling — any of the protocols we considered would be approved. All had the possibility of deadly side effects. It’s frightening to think a government agency might have limited our options because it thought one treatment safer than another.

The proper response to tragedies like the one that befell Jolee Mohr is not to try to make experiments risk-free, but to help patients understand the risks.

Robb Mohr told the Post that “the science seemed good. There’s nothing I knew of that could have predicted this.” But the consent form his wife signed stated that the experimental therapy had possible “unknown side effects” including “in rare circumstances, death.”

Participating in experimental treatments is a decision not to be taken lightly. If the public goes along with the “safety first” mentality and abdicates decision-making authority to government regulators, we will lose an important right. We’ll lose the choice to participate in experiments that might kill us, but we’ll also lose the option to make a choice that might save our lives.